Sunday, July 26, 2009

We got out of the hospital yesterday at 5 PM, home by 6:30. The pumping regime is quite exhausting. Mom and I alternated responsibilities overnight: I changed Loki's diaper, checked his tube position, offered the bottle (all refused!), and started the pump. This took 25 minutes, every 3 hours. Mom stopped the pump, cleaned the pump bag, and flushed Loki's NG tube. During the week, we'll trade these jobs.

The big drawback of pumping is that Loki can essentially not go out in public for more than an hour. Sure, theoretically we could stroll the farmer's market with the bag and pump on the pole, but that would be more trouble and more stares than it is worth. However, we can sit by our building's pool and hot tub, or go to a friend's house.

This brings me to our request. Because I go to work, Mom will be very much tied to Loki and to home during the week, even more so than before. Social visits during this time would be greatly appreciated. Bringing a kid is OK, as long as everybody is healthy. The pool here is nice during the afternoon!

To answer a question: A gravity feed (also called bolus) is done by putting the milk in a large syringe which is connected to Loki's NG tube and held above him. You can then leave the syringe open and let gravity pull the milk to his stomach, or use the syringe's plunger to give it a push. The pump is actually used to slow the feeding down, so that we don't put too much stress on Loki's stomach.

To move to the much faster, easier, and simpler gravity feeds, the pump is gradually sped up, reducing the time of each feeding. The doctors said to not do this until our appointment in a week. However, when we look back on the day the NG tube went in, there was little actual evidence that a pump is needed. We tried one gravity feed, and Loki was fussy. So the doctors said to use the pump. Yet Loki was still fussy! However, then the doctors said to continue the pump for a couple days in order for Loki to adjust, which he did. Thus, Loki's reaction to the gravity feed may have simply been his reaction to the food itself. We have decided to speed up Loki's pumps each day, and watch his response.

The best news through all of this is how Loki has responded. He is already much happier than before, talking and smiling more. He is also already looking larger, and gaining a bit of weight (80 grams (or almost 3 ounces) on his final hospital day!). And he is making some sudden developments. He sitting up for a few seconds while leaning on his hands, he rolls over both directions now, and he moves across the floor ( he lays on his tummy and pulls himself along the ground, pulling his knees under his booty and pushing himself forward with his feet).

Despite this, we have a different and significant challenge ahead: Loki must learn to eat again. As I mention, he is generally refusing the bottle.

Now, some thoughts from Mom:

Placing the tube is quite challenging. We have to do this ourselves every month or whenever it comes out. Loki pulled the tube out twice during his first 24 hours. I was trained by the nurses, but only put it in with supervision. It is a very uncomfortable process for Loki and he fights with all his might. We measure the tube from the tip of his nose to the top of his ear, than diagonally down to the navel. Subtract a centimeter and you have the correct length. Push it in the nose, which causes pain and some bleeding when not done smoothly, and tape it to the cheek. Push air in the tube with a syringe to listen for the "poof" with a stethoscope, indicating the placement is correct, and all done. Hopefully Loki won't pull the tube out before it expires!

Although a hospital stay is not fun, we were lucky again with most of our nurses. Loki was quite a celebrity in the hallways. Often we did not recognize the nurses but they knew him. One nurse who walked in to give a quick hand commented, "Oh, I know that little guy. That's Loki, he's the popular baby." Obviously, we're proud to be the parents of a baby with a fan club!

Saturday, July 25, 2009

Loki will probably be discharged from the hospital tomorrow. He has been fed by NG tube + pump for 48 hours now. He gets thawed breast milk, fortified with NeoSure to 27 calories per fluid ounce. Beginning yesterday, his mood improved and he began to take the feedings without much fuss. He has not gained weight yet, which the doctors want to see, but that can take a few days.

We will still do more follow up exams. Loki's esophagus will be viewed with a scope camera soon, and he will undergo the MAG3 scan to check out his kidney function on August 11. He will also have his blood and urine tested in a handful of weeks.

In order to go home, we must know how to care for an NG tube, including putting one in. Today, Mom inserted her first NG tube. It was a bit crazy! Loki was screaming, of course. But once she got it going, it slipped right in, and Loki calmed down soon after. Obviously, she is a Super Mom.

The feeding by NG tube and pump is very time consuming. The entire process takes almost one and a half hours, and is done every three hours. There is work during the first half hour and the final fifteen minutes. Thus, there is a wait of almost an hour in the middle. As you can imagine, this is draining, especially overnight. Hopefully Loki won't be on the pump for more than a couple weeks: As his stomach adjusts, he will be able to take in the food faster. Eventually we'll just use gravity, without a pump.

Mom is off sleeping, and I have overnight duty. It will be tough, but hopefully our last!

Friday, July 24, 2009

It is pretty challenging when new neighbors move in late at night. This always happens with a fanfare of people changing beds, getting supplies lined up, bright lights on, nurses, nurse assistance, doctors, beeping machines, worried parents and of course unhappy child. I understand unhappy. I am not happy either. Prefer to be home in my own bed, where the door is not left open every so many minutes with even more light and noise penetrating into the room. Our broken night will at least be a little less broken.

Loki gets his feeding by pump, every three hours the pump runs for an hour, then beeps, needs flushed and two hours later we start the same process again. Starting to get a little worried about the short naps we are facing with this new feeding strategy. Truly hope the little man will quickly be able to take in more food so we can stretch the time in between.

On a more positive note, at medical kids BINGO Loki won a "to order storybook." He will be the hero, or at least main character, with picture and name in his own personal version :-) Even better news, after a 24 hour period in which Loki was rather grumpy, he has gotten much happier and perkier again. Must be that book deal, or maybe his tummy is stretching enough for the food to feel more comfortable.

Thursday, July 23, 2009

Wednesday, July 22, 2009

Loki's NG feeding tube was just put in. The doctors want to keep him here a couple more days for observation.

There are advantages and disadvantages to the feeding tube. Obviously, we have been struggling with getting food into Loki, and this will make our daily battles much less. He will get the calories that he needs, and will put on weight. We will likely be able to sleep more too!

But children with feeding tubes develop issues. They don't easily learn that feeding is what relieves hunger. They can develop aversions to food and to the touching of their face. Getting the tube in is not fun, and they do come out. And the tube can irritate his esophagus, which is already a problem. In addition, imagine swallowing food with a tube in your throat. Fortunately we have an amazing occupational therapist at home who can help Loki and us making eating a positive experience.

In a week or two, Loki will have an esophagoscopy, which is the examination of his esophagus with a camera if the medicine is not working by then. The gastroenterologists want to wait until the increased dosage of drugs has fully taken effect.

Because his kidney seems OK in the short term, the MAG3 is on hold. Dr. Baskin still wants Loki to have one, but it can be done as an outpatient (no overnight stay) procedure. That delay is fine with me, as it is an unpleasant procedure: Loki will get an IV, a urinary catheter, and then is strapped down to a platform for 30 minutes.

Mom took a before and after picture of Loki's handsome face, and the diagnosis is..... still a super handsome baby! Loki is a trooper!

What we've not mentioned is how much attention we must give Loki. He generally will not lay for long on his own. And when we hold him, he insists that we stand and walk around. Getting him to sleep requires perhaps 30 minutes of bouncing. And once down, he does not sleep for long, especially if we have roommates. (We just went 24 hours without, but before that we shared with a family who was not always considerate of out situation.) We are happy to do what we must for our little man, But sometimes it is exhausting.

Christine stopped by early this morning with food. She gets a gold star for support!

Tuesday, July 21, 2009

Almost everyone agrees that Loki will need an NG (i.e. through the nose) feeding tube. But the final decision waits on two things. First is confirmation from the urology team that Loki does not have an acute (sudden) kidney problem. But the urologists will not do that until the MAG3 scan is done. The scan was scheduled for today, but when we arrived, the radiologist noticed that Loki's IV--which is needed to inject the radioactive solution--was over 48 hours old and leaking. She was unable to find someone skilled in putting in a new IV. The scan has been rescheduled for tomorrow afternoon.

Second, the doctors want to see if Loki eats better once taken off the IV fluids. These fluids can suppress thirst, and thus cause him to not feel like taking the bottle or breast. Mom and I are confident that little will change, but Loki must go 24 hours without IV fluid, which began a couple hours ago.

Thus, tomorrow afternoon we should know more.

Mom was able to get a good night's sleep at Margaret's, and I head home tonight.

There is not much to report from this day at the hospital. Loki still doesn't eat. The MAG3 scan of Loki's kidney has been delayed until tomorrow due to a shortage of some necessary chemical.

We were visited by a urologist whom we saw back in January and February (but not Loki's main urologist, Dr. Baskin). After examining Loki's kidney ultrasound from Saturday, he believes that the kidney is not that much enlarged. In fact, it has probably been slightly enlarged ever since the surgery. Thus, the question is, how much did it grow recently? Loki had a kidney ultrasound a couple months ago, after all his surgeries but before this latest problem. That image is over at Children's Hospital Oakland, where it was performed. The staff is working on getting that to here for comparison.

The good news is that this continues to decrease the chance the Loki experienced a major, sudden problem. The bad news is this points to an ongoing minor problem: That his single kidney may not be that strong. In other words, it may not have the backup strength to withstand a problem such as the minor dehydration which occurred in recent days. If this is the case, then in the short term a feeding tube is more likely, and in the longer term more monitoring would be needed.

Tomorrow: The MAG3 scan, and perhaps a visit from Dr. Baskin.

We missed Saturday's 9 month birthday of Loki. Three-quarters of a year!

Sunday, July 19, 2009

After review from Mom, we agreed that my earlier post from yesterday afternoon was somewhat too pessimistic. We edited the online version, but the original one went out by email. This one will hopefully be more accurate!

The situation is not quite as bad as I initially made it out to be. Yes, Loki's kidney is probably partially blocked, but that is not confirmed. And while surgery is likely, it is not definite.

Today is mainly a day of waiting and observation. The problem is that Loki may have two things wrong: reflux causing an irritated esophagus causing him to not eat enough, and a partially blocked kidney. The evidence of each can interfere with that of the other, making a diagnosis difficult. Thus, today the goal is to get him hydrated back to normal with an IV so that tomorrow's MAG3 scan of his kidney looks only at kidney problems, without dehydration getting in the way. The drawback of the hydration-by-IV is that it can even further decrease his appetite. And his left hand is bundled in bandages and an arm board, frustrating him when he tries to play with toys!

In fact, most of Loki's symptoms could be explained by the esophagus and lack of eating: Less but more concentrated urine, and high levels of creatinine and potassium in the blood. However, his enlarged kidney remains the mystery. (Update 4:15 PM: His creatinine level is 3.6, down from the earlier high of 4.6 and closer to his level a couple months ago of 3. This implies less problems with the kidney.)

Loki's mood is clearly more down today. This may have been partially caused by Mom's absence: Last night was there first night apart since Loki first came home from the hospital in February. I was unable to get him to smile, but when Mom arrived, he has pure happiness.

Loki is also eating very very little today. And unlike yesterday, he does not like the liquid Similar formula and prefers beast feeding.

In some ways, this is a more labor-intensive time than in the past. Even compared to April's surgery, Loki is busier, with his hands, toys, etc. He needs almost constant attention at the hospital.

The upside of this is that Mom was able to have the fullest night's sleep that she's had since September. She had a beer, and then slept for 7 + 1/2 hours.

Our friend Christine came to the hospital today with super food, and stayed for a few hours. Much appreciated!

We'll be here several days. We'll try to alternate evenings. I should go to work tomorrow.

We just spoke with a nephrologist fellow and have some more news. Summary: Loki's kidney is probably blocked at the same place (the ureteropelvic junction, or UPJ) as in January, although the severity of this problem remains unclear. And he is still not eating enough, and runs a risk of dehydration, although it remains unclear if this is related to the kidney. Either way, a surgery is pretty likely.

Details: Loki is eating a bit more, like 20 mL every 2 hours. This is still about one-third of what he needs. Everything points to esophagus irritation from reflux as the cause. His reflux medications were increased a few days ago, and these can take several weeks to take effect. Thus, unless he becomes dehydrated, we should just wait.

Several things may point to kidney failure. Loki's urine output is low, and it is dark. His kidney is moderately enlarged. His ureter is not enlarged, implying that any blockage is at the UPJ. His creatanine (a protein that the kidney should be removing from the blood) is slightly elevated, although this could be caused (at least partially) by the kidney blockage. His potassium (which should also be cleaned from the blood by the kidney) was high. However, his 1:00 AM blood sample was a bit clotted (dried), which would have falsely increased potassium. Loki has his blood drawn about two hours ago.

Thus, we are facing two problems, none of which require action immediately as of yet. The irritated esophagus should improve on its own with the medication kicking in. The kidney probably won't improve on its own. Instead, it will likely need a surgery or two.

I'll sleep in the hospital tonight, and Mom may get her first full night's sleep in nine months at a nearby friend/nurse's house.

Saturday, July 18, 2009

The Doctor walked in right after I posted the update. The results of the renal (kidney) ultrasound came back. It seems the kidney is building up urine again (hydronephrosis). Although he wants to have urology take a look he thinks it may be another issue at the ureteropelvic junction. This where the first obstruction was repaired. Although the Dr. does not know yet what causes the obstruction, my theory of scar tissue was definitely a possibility. Obviously very bumped right now. And grateful we happen to be at the hospital for something seemingly unrelated, so we are able to catch this early! Please fingers crossed once again!

Thank you all so much for the warm thoughts and sweet comments! We're doing quite well. We are very happy with Loki's good Drs. and relieved they keep an eye on him. Seems the diagnosis is esophagitis (inflammation of esophagus caused by reflux). Eating a bit more now. He is much less uncomfortable! We are also in a much quieter room than last time (two doors up from previous room). That makes a huge difference. I only slept about 1.5 hour, but feel relatively rested because it was quiet overnight.

Loki slept better than ever, after he first screamed his lungs out when they tried to put an IV in. I think not eating decreases the reflux and thus makes for more comfortable sleep.

The nurses are very sweet and all charmed by Loki. They linger around his bed a little after procedures, playing with him or offering to walk him around so I have a break. Cute!

Blood tests came back normal, although protein level in his urine was somewhat elevated. They will test again. I hope to talk to the Dr. more to find out what this may mean.

Loki is spending the night at the hospital after eating almost nothing over a 24-hour period. Ironically, just before this began, Mom decided that her relentless focus on Loki's feeding was damaging her sanity too much, and that she would relax: She'd help him eat and she'd record his progress, but not dwell excessively on the details.

But even before she had a chance to implement her new approach, Loki was unable to eat. Beginning Thursday evening, he would take a drink or two and then wiggle, squirm, and cry in discomfort, if not pain. Earlier today, a couple of phone consultations with the gastroenterologist led her (the doctor) to recommend that Loki come to UCSF (University of California, San Francisco) Children's Hospital. However, we had to be admitted via the emergency room, which was very busy. Three hours later, we were shown our room, which may the very same one in which we spent the night after Loki's final surgery.

Loki will be monitored overnight, with his blood and urine tested. We were surprised that the doctors did not use an IV to rehydrate Loki. It seems that he is still reasonably hydrated, and--most importantly--his kidney is working. A gastroenterology resident (a young doctor in training) will visit tomorrow morning.

Loki's behavior has been top-notch. He is normally a very well-behaved baby. But despite his lack of food and sleep, and being in a noisy emergency room for three hours, he was even happier than he would have normally been at home. Still awake at 11 PM, I easily had him giggling in the hospital bed. Mom believes that he always acts better in hospitals. Does it feel like home? Or is he just trying to charm the ladies?

Once again, Mom is "taking one for the team" by sleeping in the room with the little man. There is only room for one, so I drove back to Oakland. We'll update as we can.

Wednesday, July 15, 2009

Loki gained weight, quite a bit in fact. He weighs in at 11 lbs 15 oz. This is a gain of 7 oz in three weeks per Doctor's scale. Not bad at all. In addition, he ate 500 mls by bottle and spoon yesterday. That is more than he has eaten ever!! He was very hot and had a low grade fever, most likely caused by the heat. He loved anything cold. Cold breast milk and rice cereal, cold avocado, cold prunes. Anything I offered, he gratefully ingested. Except for the breast. His reflux is pretty painful and milk straight from the breast does not sit well. He sucked for a few minutes but then showed a lot of discomfort. The prevacid went up to 3.6 mls per day and until this starts working, which is usually within 2 weeks, we give 2 mls of zantac again. Hope the poor little guys feels better soon.

Yesterday sleep? Not so much. He woke up yesterday morning at 4:30 am, after a short night, and only slept for approximately 30 minutes, all cat naps combined, until going to bed around 8:00 pm. Bet that also was the heat!

Today, sleep is all he needs. Food? not so much. Cold or warm, breast, spoon or bottle? nah.....

I have ambivalent feelings, feel sad and worried about not being able to breastfeed at this point. But also try to go with whatever Loki shows he needs. I wish I could breastfeed through next winter because of antibodies, coziness and ease when out and about. In addition, Loki seems to change his mind a lot about preferred method of food intake, if any at all. Want the breast to be available if he decides to go back. But you know what? I have given it nine months. Nine very, very long months and I am done pushing myself, or him, in any direction. I will pump three times a day, express by hand a few times a day and then just wait and see. Maybe I can keep a low supply active until next spring? At least we have about 5 more months of milk in the freezer! Production is down and I just do not know how to get back to pumping as much as I did. I want to enjoy being Loki's mom. He deserves a happy and relaxed mom, and I do not know whether I can be that if I have to pump eight times a day again! So hard to allow myself this space though!

Sunday, July 12, 2009

Wednesday, July 8, 2009

12:45 am: squeeze between open dishwasher and chair, walk around the edge of the table, do not bump into fridge, left around the table, bump into the bouncy ball, careful dad's bag on the floor on my left, turn sideways to fit between the high chair and bouncer. Left around the next corner, careful open dishwasher, clock on microwave still 12:45 am. Loki has been drinking for a minute. Just keep going. Around the table, in circles, ouch, hit toe on high chair, cat looks interested. Around and around until clock says 12:48, Loki stops drinking, back to bed.

3:07 close dishwasher, one less obstacle on our course. Walk around the table, careful at the high chair, toe still hurts. Loki drinks on left side, minutes are much longer at night. Can walk four circles around the table in 1 minute, something is not right with that microwave clock. Bouncy ball in my way again, push with knee while continuing to walk, otherwise Loki stops drinking. After what feels for miles Loki drinks for 13 minutes. Completely asleep. Back to bed.

5:10, is it getting lighter already? Walk around the table, getting used to obstacles, definitely easier with dishwasher closed. Loki is drinking with a strong suck on right this time, minutes seem to go faster again. Walk with brisk pace around the table, venture out to the living room area, make sure to see the clock when Loki is done. At 5:23 Loki has sucked for 8 minutes.

Total minutes of drinking 21, total number of feeds 3. Uhm, does 21 count as 1, 2 or 3 feeds? Who makes up the rules? I guess I do. Let's make it 2 feedings of 10 minutes each. Not much but oh well.

Get the picture? That's what the last several nights have looked like. Loki's reflux has worsened and he can no longer drink while laying down.

Loki continues to think it is fun to live up to his name. We cannot write a blog post bragging about improved eating and sleeping, or he will show us who is boss. As if we ever doubted that!

After last update, Loki's eating and sleeping went downhill again, not eating much, closing his little lovely lips tightly before the spoon could enter with yummy food, and not opening his mouth for the breast. More crying, fussing and little sleeping, day or night. Wow, my world has become minuscule and overly focused on food and sleep. After a week of frustration he ate better again for the past three days, today no interest again. Luckily a little more sleep than the two, three hours/night of last week. Although dad cannot yet feed Loki -we're working on it- he does wake up in the morning to take Loki into the living room so I can sleep for an hour or so. That helps.

I am so happy and grateful for how well Loki is doing, yet the constant struggle for food and sleep is rather challenging. I understand the families I have worked with so much better and much more profoundly than I could have ever imagined. It is so primal to want to feed one's child. Still getting comments from strangers on the street "aw, he's so tiny, when was he born?" geesh, what to answer? Even 5 months, his current adjusted age, sounds unbelievable with his current size. Still fitting in newborn clothes.

Oh, how I wish this boy would enjoy his food at least half the time so he would gain some weight.

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.